Dementia Awareness Month: You Are Not Alone – communicating, socialising and friendships

For a person with dementia, their family and other carers, one of the hardest changes is a sense of isolation. Today’s post is about socialising, friendships and communicating with people with dementia. It includes feedback from people with dementia on what matters to them, and there’s no better source of information!

YouTube: You Are Not Alone, Alzheimer’s Australia

hwdeffectivecommnWebpage: Effective Communication, Alzheimer’s Australia Vic

Losing the ability to communicate can be one of the most frustrating and difficult problems for people with dementia, their families and carers. In these short, helpful videos you will learn some practical communication tips.

communicating-across-dementiaBook: Communicating Across Dementia: How to Talk, Listen, Provide Stimulation and Give Comfort by Stephen Miller (2015)

Information and advice for making vital communication easier and more effective.

If someone close to you has dementia (Alzheimer’s Disease is the most common type) they need your help. You will know that communication has become more difficult and frustrating. This jargon-free book explains why this happens and how you can make important improvements by re-thinking your whole approach. Areas covered include:
– Creating the right conditions for good communication
– Making conversation easier
– Non-verbal communication
– Adaptations to the home
– Finding stimulating activities
– Dealing with difficult situations

Looking after a person with dementia involves many challenges. Good and effective communication can help to make these challenges more manageable and greatly reduce stress levels, both in the person with dementia and in his or her carer.

jdc_julyaug2016Article: Communication skills: emPoWereD Conversations, Sue Bellass, Phil McEvoy and Tracy Williamson, The Journal of Dementia Care, July-August 2016, p.16&18

Ordinary communication between people can be disrupted by dementia, but a new training programme offers a solution.

“Communication is a core aspect of human experience and has a profound effect on the quality of our lives. Being able to express ourselves, and to understand other people, shapes our sense of who we are and how we connect with our social world. The experience of dementia can disrupt interactions between people, potentially leading to frustration, misunderstandings and alienation (Snyder 2006). Here, we will report on a communication training programme designed to overcome some of these difficulties.” (p.16)

Note: should you be interested in this article please request it through our handy form.

Toolkit: Community Café Toolkit, Alzheimer’s Australia Vic

If you like getting involved, setting up a local Community Cafe may be right for you.

The toolkit contains:

  • A manual with instructions on ‘how to’ establish and run a community café in your region; and
  • Tools in the form of checklists, templates and resources to assist you in getting started and to assist in the day-to-day running of your café.

To request your copy of the Community Café Toolkit please click this link and then follow the prompts. If you are in Victoria, Australia please use this link instead.

aja351coverArticle: Facing the times: A young onset dementia support group: FacebookTM style, Denise Craig and Edward Strivens, p.48-53, Australasian Journal on Ageing, Vol. 35, Iss. 1, March 2016

Young onset dementia accounts for up to 1 in 10 dementia diagnoses. Those diagnosed face premature transition into the realm of aged care services and adjustment to an illness of ageing prior to age 65. To help elicit communication of the perceived psychosocial needs of this group, provide a platform to gain peer support and advocate for increased awareness, the Young Onset Dementia Support Group was established on the social networking site, FacebookTM. Followers post comments, read educational or otherwise interesting news feeds, share inspirational quotes and access others living with dementia worldwide. Facebook provides a means of rapid global reach in a way that allows people with dementia to increase their communications and potentially reduce isolation. This paper was authored by the page administrators. We aim to highlight the promising utility of a social network platform just entering its stride amongst health communication initiatives.

Note: should you be interested in this article please request it through our handy form.

when-someone-you-know-has-dementiaBook Chapter: Chapter 5, What Are Friends For? from When someone you know has dementia : practical advice for families and caregivers by June Andrews, 2016

“Dementia presents a particular problem to friends if you are not part of the family. You might not know much about it yourself and the whole idea of it is terrifying. You want to help but you are afraid of being embarrassing or inappropriate and you just don’t know what would make a difference. Reading this chapter will provide guidance what often does make a difference, based on what people with dementia their family caregivers say.” (p.79)

For those living in Victoria

Socialise: Memory Lane Cafes, Alzheimer’s Australia Vicmemory-lane-cafe

The Memory Lane Café program is available for people with dementia and their family members.

The Australian and Victorian governments, under the Home and Community Care Program, have provided  funding for Café Style Support Programs that are offered throughout Victoria.

These cafés provide an opportunity for people with dementia and their family members to enjoy time together with some refreshments and entertainment, in the company of people in a similar situation to themselves.  Alzheimer’s Australia Vic counselling staff and trained volunteers also attend.

For more information, click here.

dam2016publectPublic Lecture: International action on dementia, Dr Ron Petersen, 22 September 2016

Dementia Awareness Month 2016 signature lecture in Melbourne will feature international dementia expert, Dr Ron Peterson (Mayo Clinic, USA). Dr Petersen will share his latest insights and research findings about dementia and the US and global experiences in establishing a national dementia strategy. Dr Petersen is a world leader in the field of Alzheimer’s disease and dementia. He is Director of the Mayo Clinic in the U.S. and was also Ronald Reagan’s personal physician and treated the former President of America’s Alzheimer’s disease.

Dr Petersen will discuss:

  • Latest insights and research findings about mild cognitive impairment and dementia
  • The US and global experiences in establishing a national dementia strategy

Who is this lecture for?

The general public, people with dementia, carers, service providers, health and aged care professionals, students, businesses and local government representatives are invited to attend this lecture.

Dementia-friendly communities – Communicating and socialising with a person with dementia

September is Dementia Awareness Month and this year we are focusing on how to create a dementia-friendly nation that empowers, respects and engages people with dementia in everyday life.  An important part of this is maintaining social connections and friendships.  People with dementia and carers alike frequently identify social isolation as one of the most profound impacts of disclosing their condition to others.

Many people are unsure how to communicate and socialise with a person with dementia and as a result, they may withdraw from a friendship or relationship with a person with dementia, particularly as the dementia progresses and the person with dementia finds it harder to express themselves. We humans are highly social creatures. Isolation from key friendships and family relationships greatly increases the stress and distress of people with dementia and those who care for them.

Our post today focuses on providing resources that help friends and family of people with dementia communicate and socialise together, for the enjoyment and benefit of all.

dementia - the one stop guideBook: Dementia – the one-stop guide : practical advice for families, professionals, and people living with dementia and Alzheimer’s Disease by June Andrews, 2015

Chapter 5 – What are friends for? has some great suggestions on how people with dementia and carers may be feeling about their personal circumstances and the reactions of friends, as well as practical suggestions for what friends can do to stay connected and offer genuine support.  June Andrews has some great words to offer in the opening paragraph:

“Dementia presents a particular problem to friends if you are not part of the family. You might not know much about it yourself and the whole idea of it is terrifying. You want to help, but you are afraid of being embarassing or inappropriate and you just don’t know what would make a difference. Reading this chapter will provide guidance on what often does make a difference, based on what people with dementia and their family carers say.” (p.75)

tips_friendsHelpsheet: Tips for Friends, Alzheimer’s Australia

This Sheet gives you a few tips on how you can support a friend with dementia and their family. You can make a difference.

“Although our lives are changed forever, there is life after diagnosis. We need our family and friends to walk alongside us as we build a new life” Nancy, carer

Effective communication DVDDVD: Effective Communication with people with dementia, Alzheimer’s Australia Vic

Understanding how dementia affects communication and finding ways to cater for the changes in people’s abilities can help to make communicating with people with dementia more effective and enjoyable.

Communication is one of the important ways that we achieve tasks, express our needs and stay connected with each other. People who have dementia usually experience a decline in their ability to communicate. This can be frustrating and difficult for everyone involved.

In this program, people with dementia and their families and carers show some common communication difficulties. They also demonstrate various techniques or strategies that can help. By adapting these strategies to individual circumstances, effective communication can be maintained throughout all stages of dementia.

Im_Still_hereBook: I’m still here : a breakthrough approach to understanding someone living with Alzheimer’s by John Zeisel, 2010

Chapter 7 – Building a new relationship and Chapter 8 – Appreciating the new relationship include valuable information on communicating with and building a relationship in the changed circumstances people with dementia may be experiencing. These chapters offer valuable insights into what it can be like to have dementia as well as strategies for providing sensitive and practical support to friends and family members with dementia.

tips_communicationHelpsheet: Communication

This Help Sheet explains some of the changes in communication that occur as a result of dementia and suggests ways that families and carers can help. It also includes some personal tips on communication written by a person with dementia.

talking_toolkit_bupaResource: The Talking Toolkit, Bupa Aged Care

It can be hard to communicate with a loved one who is living with dementia.

The Talking Toolkit contains advice from Bupa dementia care experts. There are also tips from carers in our care homes about how best to engage and connect with loved ones living with dementia.

This free resource can be downloaded here.

comforting touch_webBook: Comforting touch in dementia and end of life care : take my hand by Barbara Goldschmidt and Niamh van Meines, 2012

The simple sensation of touching someone’s hand can have a powerful therapeutic effect. Hand massage is a positive and meaningful way of reaching out and providing comfort to those who are elderly, ill or nearing the end of life, and it can be particularly effective for people with dementia who respond well to non-verbal interaction. This book offers inspiration for all caregivers looking for an alternative way to support and connect with a family member, friend or patient in their care. It teaches an easy 30 minute hand massage sequence and offers clear instructions and detailed illustrations to guide the reader through each step. Combining light massage strokes with focused awareness, and paying close attention to points on energy pathways, this book introduces a structured way of sharing touch that is grounded in Western and Eastern massage traditions.

Friends_matterResource: Friends Matter: How to stay connected to a friend living with dementia, Alzheimer’s Australia Vic, 2012

Friendships matter. Friends help us navigate life’s ups and downs. Friends accept us as we are.

What can we do to maintain this special bond when a friend is living with dementia? How do we stay connected in ways that are meaningful, and what interests can we continue to enjoy together?

These are some of the important questions this booklet aims to address. We hope the information and suggestions in this guide help you stay connected, as you discover different and meaningful ways to be with a friend living with dementia.

This free resource can be downloaded here.

 dementia journalArticle: The dance of communication: Retaining family membership despite severe non-speech dementia by Bruce D. Walmsley and Lynne McCormack, Dementia, Volume 13, Number 5, September 2014, p.626-641

There is minimal research investigating non-speech communication as a result of living with severe dementia. This phenomenological study explores retained awareness expressed through non-speech patterns of communication in a family member living with severe dementia. Further, it describes reciprocal efforts used by all family members to engage in alternative patterns of communication. Family interactions were filmed to observe speech and non-speech relational communication. Participants were four family groups each with a family member living with non-speech communication as a result of severe dementia. Overall there were 16 participants. Data were analysed using thematic analysis. One superordinate theme, Dance of Communication, describes the interactive patterns that were observed during family communication. Two subordinate themes emerged: (a) in-step; characterised by communication that indicated harmony, spontaneity and reciprocity, and; (b) out-of-step; characterised by communication that indicated disharmony, syncopation, and vulnerability. This study highlights that retained awareness can exist at levels previously unrecognised in those living with limited or absent speech as a result of severe dementia. A recommendation for the development of a communication program for caregivers of individuals living with dementia is presented.

Note: should you be interested in this article please request it through our handy form.

Resource: RELATE, MOTIVATE, APPRECIATE: An Introduction to Montessori Activities, Alzheimer’s Australia

This introduction to Montessori activities focuses on the elements of a meaningful interaction with someone living with dementia. The booklet outlines why the Montessori approach works, describes the “RELATE, MOTIVATE, APPRECIATE” model and the principles of engagement under this approach. A DVD is included to provide some visuals to further guide the approach.

Resource: RELATE, MOTIVATE, APPRECIATE: A Montessori Resource, Alzheimer’s Australia

RelateMotivateAppreciate-resource_webPeople with dementia are often confronted with what they can no longer do or with the mistakes that they make. Montessori principles are designed to focus on what they can still do. One of the main Montessori principles emphasises using less language, while at the same time promoting non-verbal communication by demonstrating everything that you would like the person to engage with. This book includes 28 activities. The activities are grouped under 5 themes: watching, listening, touching, smelling and tasting. These activities are a starting point that will hopefully serve as inspiration for you to think of activities that the person will enjoy.

doyouremembersmallBook: Do you remember? Written by Kelly O’Gara & Anna McNeil. Illustrated by Kelly O’Gara, 2014

This evocative picture book tells a lovely story of the relationship between two mice – one older, one younger – and also includes helpful, age-appropriate suggestions for how 4 – 8 year old children can interact with, and enjoy the company of people with dementia.

smellofchocolateBook: The smell of chocolate: and Pog’s Alzheimer fact file written and illustrated by Barbara McGuire, 2003

This book for children aged 8 – 12 includes a story about a boy and his grandfather, who has Alzheimer’s disease as well as a ‘Fact File’ at the end of the book which includes information on Alzheimer’s disease and a range of strategies children can use to interact with people with dementia, including some tips on communication.

 

Richard Taylor – Collected works

Richard Taylor, a psychologist and person with younger onset dementia was a persuasive and passionate advocate for living well with dementia. Richard generously shared his personal experience of dementia in a range of ways – books, articles, presentations and DVDs. On July 25, 2015 Richard passed away.

Richard was a founding member of Dementia Alliance International. Another founding member of Dementia Alliance International, friend of Richard Taylor and Australian dementia advocate, Kate Swaffer, has written a beautiful and moving tribute to Richard.

Our post today focuses on Richard’s body of work – one that does not shy away from how our community can and must be more dementia-friendly and view people with dementia as just that—whole and real people.

alzheimers_from_the_inside_out_webBook: Alzheimer’s from the inside out by Richard Taylor, 2007

Thoughtful and self-reflective, this collection of illuminating essays offers a rare glimpse into the world of individuals living with Alzheimer’s disease. Diagnosed at age 58, psychologist Richard Taylor shares a provocative and courageous account of his slow transformation and deterioration, and of the growing divide between his reality and the reality of others.

With poignant clarity, candor; and humor, Taylor addresses the complexity and emotions surrounding issues such as the loss of independence and personhood, unwanted personality shifts, the struggle to communicate, changing relationships with loved ones and friends, continuous declines in ability to perform familiar tasks, and never-ending uncertainty about the future.

Article: Waiting for Godot, while living with a diagnosis of dementia, probably of the Alzheimer’s type, Richard P. Taylor, Activities Directors’ Quarterly, Vol. 9, no. 1 Winter 2008 p. 14-16

“Yesterday someone asked me if I could/would write my own care plan. A plan of care that I believe would meet my needs today! Of course I first googled “plan of care Alzheimer’s” to discover the elements common to plan of care for someone in the early stages of the disease…”

Note: should you be interested in this article please request it through our handy form.

live outside the stigma DVD_webDVD: Live outside the stigma by Richard Taylor, 2011

These are the thoughts I so wish I had access to just after I was diagnosed. It took lots of living to work out and work through these conclusions concerning the myths and stigmas that automatically come with the words “Richard you have Dementia, probably of this or that type.”  These are the words I wish someone far wiser and more experienced than I had spoken to me shortly after I was diagnosed. — Richard Taylor

Article: Measuring “the rubs” of my quality of life, Richard Taylor, Alzheimer’s Care Today, Vol.8, Issue 4, October-December 2007 p. 292-293

“How happy am I? What is the quality of my life? High or low, good or bad, poor or rich? Am I, Can I ever be really happy?…”

Note: should you be interested in this article please request it through our handy form.

be_with_me_today_webDVD: “Be with me today.” A challenge to the Alzheimer’s outsider by Richard Taylor, 2009

Richard Taylor was diagnosed with dementia, probably of the Alzheimer’s type, when he was 58 years old. Now 66, Richard speaks to the public about living with the disease and sends out a challenge to the Alzheimer’s outsider. This is the first DVD in a series of Richard’s “TODAYs.” Join Richard as he speaks from his heart, urging all of us to recognize that “THERE IS A PERSON IN THERE.” It is a remarkable documentation of his presentation to aging services professionals, urging them to embrace the culture change philosophy of person-centered care. For anyone who knows, interacts with, works with, or provides services to people with dementia.

Article: Who actually cares about respite care? People who attend it the most – and are consulted the least, Richard Taylor, Activities Directors’ Quarterly, Vol. 8, no. 3 Summer 2007 p. 27-28

“Three cheers for each and every person who works hard in his or her country, state, and community for funding of respite care! It provides a necessary and useful pause for caregivers.

Now, what about the person who uses the service? What about the quality of the service?…”

Note: should you be interested in this article please request it through our handy form.

100answers20questions6pers_webDVD: 20 questions 100 answers 6 perspectives hosted by journalist Julie Anderson, this program features Judy Berry, Mona Johnson, G. Allen Power, MD, Richard Taylor, PhD, Sarah Rowan, PhD, and Bill Thomas, MD, 2012.

The topics include:

•Maintaining a respect for the personhood of each person
•Ways to help persons with dementia to continue to live purposefully
•Recognizing differences in forms of dementia
•Medications and behavioral concerns
•End-of-life care
Everyone will be informed, encouraged, and challenged by these well-rounded insights.

Hosted by journalist Julie Anderson, this program features Judy Berry, Mona Johnson, G. Allen Power, MD, Richard Taylor, PhD, Sarah Rowan, PhD, and Bill Thomas, MD.

Here is a list of questions:

1.What is dementia?
2.Are all dementia the same?
3.What is Alzheimer’s disease then?
4.How do care partners approach a person with dementia in relation to types of dementia?
5.We have heard these words; caregiver and care partner. What do they mean?
6.How should a doctor tell you about a diagnosis, especially a terminal diagnosis of Alzheimer’s disease and other related dementia?
7.What is the best way for a physician to present a diagnosis?
8.How would you like the diagnosis relayed to you as a patient or as family member?
9.What role should you take in planning treatment?
10.What criteria would families/professionals use to decide which drug to use?
11.Is there a need for someone with dementia to enroll in clinical trial?
12.Why do people resist accepting a diagnosis?
13.What is the importance for accepting dementia diagnosis?
14.Common phrase, “Alzheimer’s is the long goodbye.” “People with Alzheimer’s disease are fading away.” Is this a stigma? Are people with dementia really fading away?
15.How can someone living with dementia have a sense of purpose?
16.When dementia strikes in the family, what are some of the topics to discuss about dementia diagnosis at the family dinner table?
17.What about hope?
18.How can care partners understand what its like to live with the symptoms of dementia?
19.what are best practices for care partners, professionals and people with dementia?
20.In the life of a person with dementia today what is the role of reminiscing?
21.How can care partners minimize stress?
22.In reality, when should a person with dementia move to assisted living community?
23.It is a human moral responsibility to look out for your neighbor; to have each other’s back. In this context, how should society, governments and families understand and respond to dementia?
We believe that this video is both informative and helpful to you in answering some of the questions you might have. Remember, the answers from each individual in this video are personal opinions.  The video is designed to give you information from various points of view so you can make informed decision as per your situation. Keep in mind that if you have met one person with dementia, you have only met one person with dementia.

living w dementia R Taylor DVD_webDVD: Living with dementia: To change your mind about people whose minds have changed by Richard Taylor & G. Allen Power, 2011

In the first of three parts, Dr. Power makes the case for a paradigm shift needed in the established model of institutional long-term care. Viewers see documented evidence of the negative outcomes that result from traditional care, including the dangerous practice of “medicating away” the predictably negative reactions that emerge in response to standard care practices and attitudes. In describing a new vision of care, Dr. Power describes how to

 

  • Redefine the disease to better understand those experiencing it
  • Stop making people with dementia look and act like we do
  • Recast “problem behaviors” as mechanisms for coping and communicating
  • Find new ways to make normal life experiences accessible to people with dementia
  • Create more opportunities for people to feel connected and find meaning day to day
  • Decrease suffering and increase satisfaction using a new “experiential” model of dementia care

In part two, Dr. Taylor, a former psychologist and educator, articulates the needs, fears, and all-too-common negative experiences of a person diagnosed with dementia. He speaks from the heart on behalf of all those who are unable to communicate for themselves and, at the same time, speaks as one unique individual asking to be respected, supported and, most of all, seen and heard. With surprising candor and wit, he presents moving personal stories and sage advice that provide new insight about the experience of the disease to formal and informal caregivers as well as LTC managers and administrators.

Together, in part three, these two inspiring speakers respond to common questions and concerns, including

  • How to communicate a person’s preferences to care staff
  • Whether asking for opinions and responses from people with dementia is confusing for them
  • Ways to have better long-distance interchanges with a loved one by phone
  • Whether better care practices can be taught or are essentially innate
  • And much more

This valuable training tool helps to raise the awareness of anyone working in long-term care settings to the remaining potential for people with dementia to lead satisfying and fulfilling lives — with appropriate supports — despite their losses.

* G Allen Power is the author of      “Dementia beyond drugs : changing the culture of care” and he discusses parts of his book as well as referring to Tom Kitwood and the Eden principle

Creating a dementia-friendly nation – Dementia Awareness Month

dementia friendly nationEvery September we work extra, extra hard to draw Australia’s attention to dementia and this September is no exception. Our focus this year is Creating a dementia-friendly nation.  A dementia-friendly nation encourages Australians to become dementia-aware and to have a better understanding of what it is like for a person to live with dementia. We are keen to help communities become dementia-friendly, where people with dementia feel understood, engaged, included and valued.

During September there will be a range of events that you may be interested in attending. Here’s an excerpt from the calendar, you can find the full schedule of events here:

14 September: Memory Walk and Jog Geelong. Find out more info or register for this event.

18 September: Dementia Awareness Month Public Lecture: Dementia-friendly concepts and communities by Steve Milton. Steve Milton is one of three directors of Innovations in Dementia, a not-for-profit community interest company in the UK. Innovations in Dementia work with people with dementia, partner organisations and professionals to develop and test projects that enhance the lives of people with dementia. Steve takes a leading role on dementia-friendly communities – and despite their small size – Innovations in Dementia’s work in this area has been highly influential in the UK, which made the creation of dementia-friendly communities a priority of the Prime Ministers Dementia Challenge in 2012. Register for this event. Or download a flyer with more information on the event.

21 September: World Alzheimer’s Day

Activities are planned for all over Victoria, take a squiz at the Calendar of Events which includes detail on Melbourne-based and regional events. Whether you’re in Glen Waverley, Leongatha or Mildura, we have something for you.